Essential Elements For Safe and High-Quality End-Of-Life Care

national consensus statement
essential elements for

safe and high-quality
end-of-life care
contents
Introduction 2
Application 2
Scope 2
Intended audience 3
Guiding principles 4
Essential elements 6
A. Processes of care 9
1. Patient-centred communication and shared decision-making 10
2. Teamwork and coordination of care 13
3. Components of care 14
4. Use of triggers to recognise patients approaching the end of life 17
5. Response to concerns 19
B. Organisational prerequisites 21
6. Leadership and governance 22
7. Education and training 24
8. Supervision and support for interdisciplinary team members 26
9. Evaluation, audit and feedback 27
10. Systems to support high-quality care 29
Appendix A: Terminology 32
Appendix B: Contributing documents and web sites 36
Appendix C: Consultation about the Consensus Statement 38
1 National Consensus Statement: essential elements for safe and high-quality end-of-life care
introduction
The health care that people receive in the last also work in synergy with local processes for
years, months and weeks of their lives can help to recognising and responding to clinical deterioration.
minimise the distress and grief associated with
death and dying for the individual, and for their Effective communication and coordination of care
family, friends and carers. The purpose of this with community care providers are critical
National Consensus Statement: essential elements considerations when planning and implementing
for safe and high-quality end-of-life care (the systems to address the elements of the Consensus
Consensus Statement) is to describe the elements Statement. Acute health services should consider
that are essential for delivering safe and high- how to work collaboratively with partners – such as
quality end-of-life care in Australia. The Consensus residential aged care facilities, specialist palliative
Statement sets out suggested practice for the care services, general practitioners and social care
provision of end-of-life care in settings where acute agencies – to maximise the opportunity for patients
care is provided. Clinicians, health service to be cared for and die in their preferred place,
executives and managers, policy-makers, and to optimise the coordination and delivery
educators and training providers can use the of end-of-life care.
principles and elements of the Consensus Some actions within the Consensus Statement are
Statement as a guide to improving the safety and currently aspirational. It is likely to take time for
quality of end-of-life care. health services to develop and implement systems
The Consensus Statement reflects the views of that enable care to be consistently delivered in
health consumers and carers, experts in the field, accordance with all the principles and elements
and the Australian Commission on Safety and outlined in this document.
Quality in Health Care (the Commission). It has The actions in the Consensus Statement may need
been derived from expert experience and published to be applied repeatedly for some patients. The
evidence, and developed in partnership with carers process of dying is not always straightforward, and
and consumers, and representatives from public it is likely that aspects of care will need to be
and private hospitals and health services, revisited as a patient’s condition changes. For
professional colleges, state and territory health example, the patient’s preferred place of care, and
departments, and other government agencies. their psychosocial, cultural and spiritual care needs
may change over time, and must therefore be
application repeatedly assessed.
The Consensus Statement aligns with the
National Safety and Quality Health Service scope
(NSQHS) Standards, but provides recommended, The Consensus Statement relates to situations
rather than mandatory, practice. It also aligns with where end-of-life care is indicated for adults who
the National Consensus Statement: essential are clearly approaching the end of their lives.
elements for recognising and responding to clinical
deterioration, and it is intended that It may be particularly appropriate to apply the
these documents be applied together. elements of the Consensus Statement at two
particular times near the end of life:
Health services will need to develop their own
systems to address the guiding principles and  when a patient is likely to die in the medium
elements in the Consensus Statement, so that they term (i.e. within the next 12 months), but
deliver safe, timely and high-quality end-of-life care. episodes of acute clinical deterioration or
These systems will need to be tailored to the exacerbation of the underlying illness may be
setting, the needs of the population, and available reversible
resources and personnel, while being in line with
 when a patient is likely to die in the short term
relevant state and territory or other programs.
(i.e. within days to weeks, or during the current
Systems, processes and structures for delivering
safe and high-quality end-of-life care should admission) and any clinical deterioration is likely
to be irreversible.
Some elements of the Consensus Statement may intended audience
only be relevant at particular points in time,
whereas others are applicable across the whole The Consensus Statement has been developed for:
patient journey. For example, some aspects of
 clinicians who are involved in the provision of
advance care planning may no longer be as
acute health care
relevant when a patient is imminently dying,
whereas good symptom control remains relevant  health service executives and managers who
during terminal care as well as for quality of life are responsible for developing, implementing
over the longer term. and reviewing systems for delivering patient
care, including end-of-life care, in individual
The Consensus Statement is generally targeted at health services or groups of health services
acute health services, including intensive care and
the emergency department. It applies in all types of  providers of clinical education and training,
public and private acute hospitals, from large including universities and professional colleges
tertiary hospitals to small district and community  health professional registration, regulation and
hospitals. The principles and elements of the accreditation agencies
Consensus Statement also apply to situations  planners, program managers and policy-makers
where patients who are deteriorating are being who are responsible for developing state or
cared for in other settings – for example, in remote
territory, or other strategic programs dealing
clinics, specialist outpatient clinics, hospital‑in‑the‑
with the delivery of end-of-life care.
home services or aged care facilities. Such
services may need to be networked to larger health
services to facilitate the delivery of end-of-life care Disclaimer
that aligns with the principles and elements of the The Consensus Statement describes
Consensus Statement. suggested practice for the provision of
end-of-life care in settings where acute care is
When death occurs quickly as a result of sudden
provided. It is a guiding document designed to
and unexpected events, such as acute illness or
inform clinicians and others of recommended
trauma, care can and should be aligned with the
practice. It is not a legal document, and
Consensus Statement. However, some actions in
clinicians must continue to be aware of, and
the Consensus Statement may not be appropriate
or possible in these circumstances. abide by, the laws of the jurisdiction in which
they practise. Any inconsistency between the
Although the scope of the Consensus Statement is Consensus Statement and a law of a state, a
limited to the care of adults, many of the principles territory or the Commonwealth will be resolved
and actions may also be relevant for children at the in favour of the relevant law.
end of their lives.
The Consensus Statement may not apply to

situations where a patient’s treatment is being led Appendix A lists common terms and
by a specialist palliative care doctor or team. their meaning in the context of the
Palliative Care Australia developed the Consensus Statement.
Standards for providing quality palliative care for all
Australians to support the delivery of high‑quality,
patient-centred end-of-life care in specialist Appendix B lists documents that contributed to
palliative care services. Both the Consensus the development of the Consensus Statement.
Statement and these standards are relevant when
considering how to develop systems that foster a In 2014, the Commission undertook a
collaborative approach between acute and consultation process about the Consensus
specialist palliative care services.
Statement. A summary of this process
is in Appendix C.
guiding principles
1. Dying is a normal part of life and a human experience, not just a biological or medical event.
2. Patients must be empowered to direct their own care, whenever possible. A patient’s needs,
goals and wishes at the end of life may change over time.
3. Providing for the cultural, spiritual and psychosocial needs of patients, and their families and
carers is as important as meeting their physical needs.
4. Recognising when a patient is approaching the end of their life is essential to delivering
appropriate, compassionate and timely end-of-life care.
5. The prognosis and the way that people respond to medical treatment will vary between
individuals. This means that there is potential for ambiguity and uncertainty at the end of
life. This must be honestly and openly acknowledged, and discussed with patients,
substitute decision-makers, families and carers.
6. Safe and high-quality end-of-life care is patient and family-centred. Whenever possible, it
should be aligned with the values, needs and wishes of the individual, and their family or
carers. Such care should consider the patient’s expressed wishes regarding the
circumstances, environment and place in which they wish to die.
7. Safe and high-quality end-of-life care requires the availability of appropriately qualified,
skilled and experienced interdisciplinary teams.
8. Safe and high-quality end-of-life care requires effective communication, collaboration and
teamwork to ensure continuity and coordination between teams, within and between
settings, and across multiple episodes of care.
9. Care of the dying is urgent care. Timely recognition of a patient’s transition to the terminal
phase of life must be documented and communicated to patients, families, carers and other
health professionals by the interdisciplinary team. The care plan must be specifically revised
to meet the unique needs of the patient, family and carers during this phase.
10. End-of-life decision-making should be shared between the interdisciplinary team and the
patient. Substitute decision-makers, families and carers should be involved, in accordance
with the patient’s expressed wishes and/or jurisdictional legislation.
11. The interdisciplinary team has a responsibility to:
 provide timely and accurate information regarding the patient’s clinical condition and its
severity or stage, the expected disease trajectory, the available treatments, and the
likelihood of response to such treatments
 clearly communicate information to support patients (or substitute decision‑makers,
families and carers) to make decisions about care, and to check that they understand
the implications, consequences and risks associated with such decisions
 invite patients to participate in the process of advance care planning, and
create opportunities for patients to make decisions and to communicate their values,
goals and wishes regarding their end-of-life care
 offer support, expert opinion and advice so that patients (or substitute decision-makers,
families and carers) can participate in fully informed, shared (or supported) decision-
making
 identify existing advance care plans and provide care in accordance with the patient’s
expressed wishes
 document, communicate and hand over the agreed plan of care and any limitations of
medical treatment to other clinicians involved in the patient’s care. It is ethically
important not to harm patients approaching the end of life by providing burdensome
investigations and treatments that can be of no benefit.
12. For ethical reasons, it is important not to harm patients approaching the end of life by
providing burdensome investigations and treatments that can be of no benefit.
13. Patients have the right to refuse medical treatments. Decisions regarding treatment may be
made in advance and remain valid unless the patient (or substitute decision‑maker, family
and carers) state otherwise.
14. Unless required by law, doctors are not obliged to initiate or continue treatments that will not
offer a reasonable hope of benefit or improve the patient’s quality of life.
15. Care of the deceased person, and care for families and carers extends to the period after
the patient has died.
essential elements
The essential elements of this Consensus The following sections provide information about
Statement are the features that are required in each element. Each section begins with a brief
systems to ensure safe and high-quality care for introductory statement, which is followed by a list of
patients who are approaching the end of life. actions that describe the necessary processes
These elements do not prescribe how care should and systems to effectively address the element.
be delivered. Application of the elements will vary
according to the local circumstances of the health Figure 1 provides an overview of the essential
service, the available resources, and the individual elements and how they fit together within the
needs and preferences of the patient receiving Consensus Statement. Figure 2 illustrates the type
care. Health services need to have systems in of end-of-life care interventions that might
place to address all the elements. be needed as a patient approaches the end of life.
These interventions are built into the actions in
This Consensus Statement contains 10 essential the Consensus Statement.
elements. Elements 1–5 relate to the way in which
end-of-life care should be approached and
delivered. Elements 6–10 relate to structural and
organisational prerequisites for the effective
delivery of safe and high-quality end-of-life care.
essential elements
a. processes of care
1. Patient-centred communication and shared decision-making
2. Teamwork and coordination of care
3. Components of care
4. Use of triggers to recognise patients approaching the end of life
5. Response to concerns
b. organisational prerequisites
6. Leadership and governance
7. Education and training
8. Supervision and support for interdisciplinary team members
9. Evaluation, audit and feedback
10. Systems to support high-quality care
Figure 1: Overview of the 10 essential elements in the Consensus Statement
Figure 2: End-of-life care interventions
part a
processes of care
National Consensus Statement: essential elements for safe and high-quality end-of-life care 9
1. patient-centred communication
and shared decision-making
It’s when [clinicians] see that they’re very much in partnership with the patient and they’re prepared to risk
themselves to get alongside the patient. Giving the patient lots of time; being empathetic; being prepared
to recognise that the patient has got a whole lot of other things going on as well as their disease.
Consumer
A number of significant events might indicate that

key points conversations about end-of-life care should occur.
In an acute health service, these include
 The patient and the interdisciplinary team are events when:
both essential participants in discussions and
decision-making at the end of life. Substitute  a patient (or substitute decision-maker, carer or
decision-makers, families and carers should be family member, if the patient lacks capacity)
included, according to the patient’s expressed expresses interest in discussing end-of-life care
wishes, and state or territory  a life-limiting condition is diagnosed
legislative frameworks.  a patient who is likely to die in the short or
 All communication processes should recognise medium term is admitted, or deteriorates
and be responsive to the individual preferences during their admission
and needs of patients, families, carers and  a patient living with a life-limiting illness has
substitute decision-makers. had recurrent, unplanned, recent admissions
 Having conversations about death, dying and the  a previously well person who has suffered an
end of life requires compassion, knowledge, acute life-threatening event or illness is admitted
experience, sensitivity and skill on the part of the
 unexpected, significant physical
clinician(s) involved.
deterioration occurs
 A series of conversations may be needed to elicit
 a patient is dying.
the goals, values and wishes of a patient, and
reach shared decisions about the appropriate
plan for their care. The purpose of conversations about end-of-life care
will depend on the circumstances of the patient.
In some cases, the primary purpose of
communicating with patients, and their families and
This essential element primarily relates to the carers will be to impart information. In other cases,
process of clinicians communicating with patients, decisions about specific aspects of care, including
substitute decision-makers, families and carers to care of the dying, may need to be made.
make decisions about care at the end of life. Regardless of the purpose of the conversation, there
Depending on the needs and wishes of the patient, is opportunity to begin or continue the process of
other members of the interdisciplinary team may also shared decision-making.
need to be involved in these discussions.
Shared decision-making is a critical part of making actions
sure that patients approaching the end of their lives
are partners in their own care. Shared decision‑ 1.1 Clinicians and patients should identify
opportunities for proactive and pre-emptive
making is more than just providing information to
end-of-life care discussions, to increase the
patients and their families, or asking them questions
likelihood of delivering high-quality end-of-life
to inform a clinically driven decision. It is a process
care aligned with the patient’s values and
that allows patients, substitute decision-makers,
preferences, and to reduce the need for
families and interdisciplinary teams to work together
urgent, after-hours discussions
to make decisions in the patient’s best interests,
in emergency situations.
based on the best scientific evidence available, the
realities of the patient’s clinical condition and 1.2 The clinical team should work with the patient,
treatment options, and the patient’s choices, values family and carers to identify the substitute
and preferences. Doctors, nurses and other involved decision-maker, family spokesperson or other
clinicians should use their clinical skills and key contacts that the patient wishes to be
experience, and their knowledge of the patient’s involved in discussions about their care.
values and preferences to make recommendations
1.3 In some cultures, mainstream assumptions
that inform the decision‑making process.
about death and dying, and about patients and
Maximising the input and voice of patients is an families as decision-makers may not be
obligation for all clinicians. However, some patients – correct. Culturally appropriate
such as those with cognitive or intellectual decisionmaker(s) should be identified as
impairment, or severe mental illness – may not be early as possible so that strategies can be put
able to participate fully in decision-making, and the in place for obtaining their input into
capacity of patients to participate in decision‑making discussions about end-of-life care.
may fluctuate. Supported decision-making may be 1.4 Clinicians should seek to understand, and be
necessary for such patients. Supported decision- respectful, sensitive and responsive to,
making means that clinicians assess the patient’s the individual preferences and needs of all
decision‑making capacity and maximise patients, substitute decision-makers, families
opportunities for participation by patients with and carers, regardless of aspects of identity
impaired capacity. This might mean deferring such as culture, religious belief, gender or
decisions until the patient is more able to participate sexual preference.
– for example, until treatable causes of impaired
decision-making, such as depression or delirium,
are ameliorated. Where this is not possible, clinicians
should work with carers and families to support
patients to be as involved in decision‑making as
their capacity at the time will allow.
When opportunities for shared or supported

decision-making are limited or impossible –
for example, because the patient is dying suddenly
and unexpectedly – clinicians should check that the
patient, substitute decision-maker, family and carers
have a shared understanding of what has
been discussed and the subsequent plan of care.
1.5 Whenever possible, clinicians should prepare uncertainty among family and carers can
for having conversations about end-of-life result in avoidable suffering.
care. Necessary preparation may include:
1.8 Clinicians should provide an honest and
 reaching consensus among all of the straightforward summary of their clinical
clinical teams involved in the patient’s care assessment of the situation, what they
about the patient’s prognosis and what consider to be appropriate and feasible
treatment options are appropriate to options for treatment, any risks and potential
recommend side effects, and the likelihood of the patient’s
 ensuring familiarity with the patient’s condition improving in response to such
history and current condition (this may treatment. Clinicians should be compassionate
include discussion with key community and sensitive, use plain language, and avoid
care providers), their family structure, the use of medical jargon.
and cultural needs and preferences
1.9 Clinicians should express empathy for the
 arranging adequate time for patient’s situation. They should allow
uninterrupted discussion adequate time for those involved to absorb,
 ensuring that patients have access process and react to the information they are
to their regular communication aids being given. Multiple discussions may be
 arranging for the appropriate people to be required.
in attendance – ideally, this will include the 1.10 End-of-life discussions should routinely
patient; their substitute decision-maker, include the provision of information about
carers and family members; the most organ and tissue donation for transplantation,
senior doctor available; the nurse in circumstances where donation is possible.
responsible for the patient’s care; and other These discussions should be conducted with
members of the interdisciplinary team, advice from the state or territory DonateLife
such as interpreters, Aboriginal support agency and should preferably be led by
workers, chaplains or social workers clinicians who have attended the core
 ensuring that discussions can be held in an Family Donation Conversation workshop.
appropriately quiet and private 1.11 Clinicians should check that patients, families
environment. and carers have been provided with sufficient
1.6 The patient, substitute decision-maker, family support to make decisions. This includes
and carers should be provided with written support for patients, substitute decision-
information about which clinician is makers, families and carers who have
responsible for leading and coordinating their communication difficulties associated with
care. Whenever possible, this clinician should cultural and linguistic diversity, or decision-
be directly involved in discussions about the making difficulties associated with disability,
patient’s end-of-life care. mental illness or cognitive impairment.
1.7 Whenever possible, clinicians should work 1.12 Clinicians should clearly document the content
with patients, families and carers to ensure of the discussion and any agreed plan of care
that key family members, substitute decision- in the patient clinical record. Any unresolved
makers and carers are present during issues that require further follow-up should
end-of-life discussions. This will ensure that also be documented, along with a plan
consistent messages are given about for follow-up.
treatment options, their likelihood of success, 1.13 The content of the discussion and plan of
risks and prognosis. This is particularly care, including any limitations of medical
important when patients are in the process of treatment, should be communicated to all
transition to the terminal phase, as conflict and teams involved in the patient’s care, including
relevant community care providers.
2. teamwork and
coordination of care
To be able to plan appropriate death as you would plan appropriate discharge at a multidisciplinary level,
that would be good.
Nurse – public hospital focus group
The patient’s goals of care and the treatment plan

key points need to be clear to all members of the
 For a patient’s end-of-life preferences and needs interdisciplinary team, so that care can be effectively
to be fulfilled, members of the healthcare team(s) coordinated. This includes ensuring effective
who are involved in their care need to work communication and liaison with care providers in the
together effectively. community, such as general practitioners, nurse
practitioners, community nursing services, Aboriginal
 The healthcare team includes the interdisciplinary health services, home care workers, and managers
team in the health service; the patient and their of community and residential aged care facilities.
substitute decision-maker, family and carers; and
community care providers, such as those working actions
in community and residential aged care facilities,
2.1 The clinician with overall responsibility for
and general practices.
leading and coordinating a patient’s care must
 Processes should be in place to support care be clearly identified. If the patient is unable to
coordination and continuity, particularly at the speak for themselves, their substitute
interface between different services and teams decision-maker must also be clearly identified.
(e.g. between the hospital and community-based
services, or between the treating team and after- 2.2 The roles and responsibilities of different team
hours care providers). members should be clearly defined and
understood by all those involved in a patient’s
care, including the patient themselves, and
their substitute decision-maker, family
Patients often receive care from a range of
organisations with different systems, roles and and carers.
approaches to managing end-of-life care. 2.3 If there is disagreement or ambiguity about
Interdisciplinary teams include individuals with varied the appropriate options for future treatment
experience, values and perspectives on planning among members of the healthcare team(s),
and providing end-of-life care. Unless an identified the range of views and the reasons for them
person takes overall responsibility for coordinating a should be discussed with the patient,
patient’s care, and ensuring effective communication substitute decision-maker, family and carers.
and collaboration, patients can receive discordant
information and poorly coordinated care. 2.4 Appropriate processes should be in place to
enable all team members, including junior
The interdisciplinary team should respect and clinicians, to engage with the broader team,
use each other’s expertise, and that of the patient, voice concerns, and act on the expressed
substitute decision-maker, family and carers. preferences and consent of the patient.
For effective teamwork, roles and responsibilities
need to be clear, and processes need to be in place 2.5 Experienced team members are responsible
for the organisation and exchange of information. for providing supervision, leadership, support,
mentorship and teaching to develop the skills
and capacity of junior team members
in relation to end-of-life care.
3. components of care
You have to have a system in place for recognising that people are dying. You have to have a system
in place for negotiating goals of care. You need to have in place advance care planning processes, and you
need to ensure that you’ve got clinical processes in place for pain and symptom management, and care of
the family. They’re the very basic things that everybody should be entitled to.
National manager of palliative care – private hospital network
Doctors are under no obligation to initiate or

key points continue treatments that will not offer a reasonable
hope of benefit or improve the patient’s quality of
 All patients have a right to maintain their dignity,
life. Specific medical decisions about what
comfort and privacy, and to be cared for
treatments would be provided in the event of
respectfully and with compassion.
critical deterioration may be recorded in
 End-of-life care is every clinician’s responsibility. resuscitation plans.
 Processes should be in place to support
proactive, anticipatory and individualised planning For many patients approaching the end of life,
for end-of-life care. there will be a long period of transition when
treatment will continue for reversible complications
 Active medical treatments and end-of-life care are
or reversible episodes of clinical deterioration.
not mutually exclusive. Many patients may benefit
Patients at this stage may benefit from a palliative
from an approach in which medical treatments for
approach, in conjunction with active medical
their disease are provided in conjunction with
treatment of their illness. This kind of dual care
palliative interventions to improve or maintain the
can provide support and improve symptom
best possible quality of life, and provide
management, and therefore help patients to
symptom relief.
maintain their quality of life.
When a patient enters the terminal phase of their

The goal of the interdisciplinary team providing end- illness, some treatments will cease to provide
of-life care should be to deliver care that is benefit, and will become uncomfortable and
appropriate to the needs and condition of the patient, burdensome. For patients in the terminal phase of
and aligned with their expressed wishes. illness, the plan of care should generally focus on
Opportunities should be sought to identify the providing comfort to both the dying patient and
patient’s goals and wishes for their future care; offer their family and carers. The plan for a patient’s
psychosocial, spiritual, cultural and emotional terminal care should be clearly documented,
support; provide treatments that maintain or improve including plans for managing physical,
quality of life; and avoid unnecessarily burdensome psychosocial, emotional, cultural or
or unwanted investigations and treatments. spiritual distress.
Patients have the right to refuse medical treatment.

These decisions may or may not be recorded in
an advance care plan or directive.
actions
3.1 The psychosocial, cultural and spiritual 3.5 The goals of care, the treatment plan and any
needs of patients, families and carers should limitations of medical treatment for the current
be assessed, and care should be provided in admission should be appropriately discussed
accordance with their wishes, values and with the patient, and their substitute decision-
needs. Support should be offered for patients, maker, family and carers, and clearly
carers and families who wish to include documented in the patient clinical record by
cultural or religious practices in their care, the treating medical officer or team.
such as particular foods, singing, This should occur as early as possible in the
ceremonies or healing. patient’s admission to the health service, and
the information should be routinely reviewed
3.2 Patients who are likely to die within the short
and updated throughout the admission.
or medium term should be informed about the
process and purpose of advance care 3.6 The rationale for medical decisions to
planning, and asked if they would like to discontinue or withhold nonbeneficial
instigate or revisit their advance care plan. observations, investigations or treatments
should be clearly communicated with the
3.3 As part of the advance care planning process,
patient, family and carers.
clinicians should ask about, and document,
a patient’s wishes in regard to donation of their 3.7 The goals of care, treatment plan and any
organs and tissues for clinical use or research limitations of medical treatment should be
purposes after death, where this revisited with the patient, substitute decision-
is clinically appropriate. maker, family and carers when significant
changes in the patient’s condition or
3.4 Unnecessary burdens associated with medical
circumstances occur – for example, when
treatment should be avoided for dying
the patient is in transition to the terminal
patients. For example, nonbeneficial and/or
phase. The patient, substitute decision-maker,
unwanted observations, surgical interventions,
family and carers should be empowered to
investigations, medications and treatments
request further discussion and a review of
should not be prescribed or administered.
the plan at any time.
Where a clinician feels pressured – by the
patient, family, carer or another health 3.8 Information about the advance care plan,
professional – to provide such interventions, clinical treatment plan, goals of care, any
they should seek advice and support from an limitations of medical treatment and the
experienced colleague who is able to assist patient’s treatment preferences should be
with a second opinion and readily available to all clinicians involved in the
sensitive discussion. patient’s care, including those involved in
caring for the patient in emergencies, after
hours and, where relevant, in the community.
3.9 The patient, family and carers should not feel 3.13 Bereaved family and carers should be
abandoned by the healthcare team, or fear provided with written information about how to
that care will be stopped or reduced, when the access bereavement support when they have
goals of care shift from cure to comfort left the health service.
because the patient is dying. Care,
compassion, open and honest communication 3.14 Clinicians should explore and discuss
about what to expect, and the comfort of the alternatives to hospital-based care, when
dying patient remain priorities. possible and appropriate, and as preferred by
the patient. If feasible, this could include the
3.10 All patients, including people with chronic patient’s usual residence, a local hospital,
or severe mental illness, intellectual disability a community or residential aged care facility,
or cognitive impairment, have the right to or a hospice or other palliative care facility.
adequate pain relief and symptom control,
and to the prevention and relief of suffering. 3.15 Clinicians should liaise with other relevant
Physical symptoms should be managed in services and provide referral, as necessary
alignment with the patient’s wishes, and – for example, to specialist inpatient or
treatment reviewed regularly. If community palliative care services.
communication problems make it difficult to
ascertain the patient’s wishes or needs, it is
important to seek advice from, and consult
with, families and carers.
3.11 Dying patients should be supported to receive
oral food and fluids for as long as they wish.
3.12 Family and carers should be supported to
spend time with a dying patient in accordance
with their wishes, including in the period
immediately after death.
4. use of triggers to recognise
patients approaching the end of life
It takes a lot of skill sometimes to recognise when somebody is dying.
Intensive care liaison nurse – public hospital focus group
A fundamental first step in providing safe and

key points high-quality end-of-life care is to recognise those
patients who would be likely to benefit from such
 Recognition systems in acute health services
care. Considering the likelihood of a patient dying
should aim to identify patients at two
offers opportunities to identify their needs, review the
critical points:
goals and plan of care, and consider how best to
 when a patient is likely to die in the medium align care with the individual’s expressed values,
term (i.e. within the next 12 months), but goals and wishes. Routine use of simple trigger tools
episodes of acute clinical deterioration may be and questions can prompt clinicians to use their
reversible clinical judgment to make a holistic assessment of
 when a patient is likely to die in the short term whether a patient might benefit from end-of-life care.
(i.e. within days to weeks, or during the current
admission) and clinical deterioration is likely to Predicting prognosis and the timing of dying can be
be irreversible. difficult. For some patients, it may be difficult to
distinguish clinical deterioration that is reversible
from deterioration that is irreversible and part of the
normal dying process. In such cases, it may be
appropriate to consider a trial of treatment for a
defined period to assess reversibility of a
patient’s deterioration.
Clinicians should be aware of the referral criteria,

processes and timelines for accessing specialist
palliative care services.
actions  repeated calls to the rapid response team,
4.1 The ‘surprise’ question should be used by particularly if the patient has been admitted
clinicians as a simple screening mechanism to for more than one week
recognise patients who could benefit from  advanced age with increased frailty, reduced
end-of-life care interventions. Clinicians should mobility and increased dependence on
ask themselves: others to assist in performing activities of
 Would you be surprised if this patient daily living
died in the next 12 months?  moderate to severe dementia
 Would you be surprised if this patient died  multisystem comorbidities (cardiovascular,
during this admission or in the next pulmonary, endocrine, etc.)
days or weeks?
 maximal medical therapies already in place
4.2 A critically important trigger for assessment,
 decline in the patient’s condition, or a clinical
discussion and consideration of referral to
determination that they will not benefit from
specialist palliative care is when the patient,
interventions such as surgery, dialysis or
family members, carers or other members
treatment in intensive care
of the interdisciplinary team request palliative
care, or express concern or worry that the  multiple recent admissions to hospital for
patient is dying or has unmet end-of-life exacerbation of a chronic condition
care needs.  unexpected or inappropriately prolonged
4.3 Clinicians should consider other useful stays in hospital.
triggers for recognition and review of
patients who may benefit from end-of-life care
interventions. Such triggers might be derived
from condition-specific mortality risk prediction
tools or from critical events, such as:
 diagnosis of life-limiting conditions
 poor or incomplete response to medical
treatment, continued deterioration
despite medical treatment, and/or
development of new clinical problems
during inpatient admission
5. response to concerns
As physicians, we are about investigating and treating … It’s a bit of a mind switch, that what you are doing
is actually harmful and hurting rather than helping.
Doctor – public hospital focus group
Where do you go for help when [dying] is not being recognised? When there is a group of carers saying
‘No we shouldn’t be escalating care here’. Where do you go in the hospital when there is conflict among
healthcare workers about the level of care appropriate for an individual?
Intensive care liaison nurse – public hospital
When concerns are raised about a patient

key points approaching the end of life who is in distress, has a
 It should be as easy to access support for the complex condition or difficult-to-manage symptoms,
provision of appropriate end-of-life care as it is to or when end-of-life decision-making is particularly
escalate care for reversible deterioration. complex, it is important that timely and appropriate
assistance can be obtained from a suitably skilled
 A patient in physical, psychosocial or spiritual
clinician or team. The nature and timing of the
distress requires rapid assistance from a suitably
response may depend on the nature of the issue
skilled care provider. The prevention and relief of
causing concern and the person who has raised the
suffering is of paramount importance.
concern. For example, a different response may be
 When responding to concerns that end‑of‑life needed for concerns raised by a family member
care needs are not being adequately recognised about a patient’s physical pain or distress from the
or addressed, responders may require access to response required to resolve conflict
a second opinion from an independent senior or an ethical dilemma.
clinician (possibly from a separate
health service). The initial response to concerns about end-of-life
 When managing conflict, complex family care issues may be provided by a member of the
dynamics or ethical dilemmas, responders may clinical team, such as the senior registrar or
require access to a person who is skilled in consultant, or by a member of another team, such as
mediation, the rights of the person, bioethics an after-hours medical registrar or specialist
and/or the law. palliative care clinician. In some health services,
such as small rural hospitals, responding to concerns
may require access to external clinicians (e.g.
general practitioners) or the use of technology (e.g.
videoconferencing) to access off-site help, such as
intensive care or specialist palliative care. Public
advocates may also be a useful source of assistance
in cases involving conflict about what is in the best
interest of the patient.
actions
5.1 The criteria and processes for accessing help 5.7 The responder(s) providing assistance in
for end-of-life issues that are causing concern emergency situations should have access to
should be clearly defined in relevant policies support from a clinician of sufficient authority
and procedures. to make decisions about stopping
nonbeneficial treatments and providing
5.2 The patient, substitute decision-maker, family
palliative care.
and carers should understand the triggers and
process for requesting an urgent review, and 5.8 Responders should document in the health
the process for responding to their request. care record appropriate, detailed and
structured information about the outcomes of
5.3 Processes should be in place to enable
the call for assistance, discussions with the
patients, substitute decision-makers, families,
patient and/or substitute decision-maker, and
carers and members of the interdisciplinary
the plan for follow-up or further review
team to escalate concern until a satisfactory
of the patient.
resolution is achieved. This should include
access to a second opinion if there are 5.9 If the responder is not part of the clinical team,
concerns that end-of-life care needs are not they should communicate with the responsible
being adequately recognised or addressed by medical officer in an appropriate, detailed and
the clinical team. structured way about the outcomes of the call
for assistance, and the plan for follow-up or
5.4 Concern or worry that a patient is dying or
further review of the patient.
approaching the end of their life and has
unmet end-of-life care needs should prompt 5.10 Although resolving the concerns of the patient,
interdisciplinary review of the goals of care carers or family should be the first priority,
and the treatment plan, leading to appropriate whenever possible, responders providing
recommendations for follow-up and ongoing assistance should also use calls for assistance
communication. This applies regardless of as a teaching and mentoring opportunity for
whether the concern is raised by the patient; other clinicians and students.
their substitute decision-maker, family or
carers; or a clinician.
5.5 Clinicians should have rapid access to
specialist palliative care advice 24 hours a day
and 7 days a week. This may include access
by telephone or videoconference.
5.6 To avoid after-hours decisions to limit medical
treatment or stop nonbeneficial treatments,
pre-emptive planning should be undertaken by
the team with overall responsibility for the
patient’s care. When after-hours decision‑
making is required as a result of sudden or
unexpected deterioration in the patient’s
condition, the patient should be followed up
by the responsible team as soon as possible.
part b.
organisational
prerequisites
6. leadership and governance
I think there has to be a consensus view driven through clinical governance as to the approach.
The only way you’re going to drive change is to have an agreed approach. In our organisation, that can only
be through clinical governance.
Surgeon – public hospital focus group
I think [there] needs to be responsibility from that higher level to say ‘this hospital supports care of the dying’.
Nurse – public hospital focus group
actions
key points
6.1 Patients, and their families and carers should
 End-of-life care should be included in the be partners in the development and
governance system for the organisation. governance of organisational systems for
 Safety and quality of end-of-life care, including delivering end-of-life care.
care provided in the terminal phase, should be 6.2 The health service executive should consider
monitored by the executive level of governance how best to allocate resources within the
in the organisation. context of the organisation’s strategic plan to
 Leadership at all levels in the organisation support the delivery and effective functioning
is required for safe and high-quality end-of- of systems for providing end-of-life care.
life care.
6.3 A formal policy framework should exist,
outlining the organisational approach to
end-of-life care. It should include:
For many organisations, significant cultural change
 governance arrangements
will be necessary to develop successful and
sustainable systems for delivering safe and  roles and responsibilities
high‑quality end-of-life care, and to effect  communication and documentation
improvements in the experiences of patients, processes
families and carers. To achieve this, a systematic
approach and committed leadership are necessary.  processes for advance care planning
Executive and clinical leaders at all levels of the and limiting medical treatment
organisation’s clinical and corporate governance  alignment with systems for recognising
structures should provide proactive and practical and responding to clinical deterioration
support to the interdisciplinary teams and
managers who are responsible for delivering  access to specialist palliative care advice
end-of-life care. and services
 the interface with external services, such
Health services should ensure that the governance
as community and social care providers,
of systems for the delivery of end-of-life care aligns
residential aged care facilities and external
with NSQHS Standard 1 (Governance for safety
hospice providers
and quality in health service organisations) and
Standard 2 (Partnering with consumers).
part b
organisational
prerequisites
 clear dispute resolution processes, 6.7 A formal governance process should be in

including access to mediation, bioethics place to oversee the development,
and legal support in situations of complex implementation and ongoing review of
end-of-life decision-making or conflict systems for end-of-life care. If a committee
has this role, it should:
 training and education requirements
 have appropriate responsibilities delegated
 access to professional clinical supervision,
to it, and be accountable for its decisions
and formal and informal debriefing, to suit
and actions to the executive
the varied needs of clinicians
 monitor the effectiveness of interventions
 access to support and debriefing for
and education
nonclinical staff
 have a role in reviewing performance data
 evaluation, audit and feedback processes,
and reporting requirements.  provide advice about the allocation
of resources
6.4 The policy framework for end-of-life care
should apply across the acute health service.  include consumers, interdisciplinary team
It should identify potential variations in its members, managers and executives.
application that might exist in different
6.8 Organisations should have systems in place
circumstances (such as at different times of
to ensure that essential resources required
day or in satellite locations).
for the provision of safe and high-quality
6.5 The policy framework for end-of-life care end-of‑life care (e.g. private space for family
should operate in synergy with recognition meetings, equipment and medications) are
and response systems for patients who are always operational and available.
clinically deteriorating.
6.9 Organisations should work with local
6.6 Policies and processes should be in place community-based service providers to build
regarding advance care directives, organ capacity for people to be cared for in their
and tissue donation, limitations of medical preferred place of death (e.g. at home).
treatment and end-of-life decision‑making to
ensure that the care delivered in response to
deterioration is consistent with appropriate
clinical practice and the patient’s
expressed wishes.
7. education and training.
I think when it comes to ongoing professional development they should be seeking ways to get the patient
experience into that. At the moment there is only the complaints process for patients to get their experience
across.
Consumer
I found that staff just didn’t know … There was avoidance, yes, but they didn’t know what to do, they
didn’t know what they were supposed to do. They haven’t got that exposure or experience to know how
to treat a dying patient, or that patients are allowed to die.
Tissue and organ donation nurse educator – public hospital
Having an educated and suitably skilled and

key points qualified workforce is essential to providing
appropriate end-of-life care. Education should
 It is important that all care providers have a
commence early in training programs and continue
shared understanding of the local terminology,
as part of clinicians’ professional development.
policies, processes and practices associated
It should cover elements 1–5 in the Consensus
with end-of-life care.
Statement, local referral and communication
 The skills and knowledge required to manage processes, and relevant legislation and other
end-of-life care are complex and need a specific regulatory frameworks. It should also include
educational focus. training about how to have discussions and
 Education and training should enable clinicians conversations about end-of-life care.
to manage all phases of end-of-life care, from
advance care planning to recognition of dying A range of methods can be used to teach
and management of terminal care. appropriate knowledge and skills about
end‑of‑life care. They include face-to-face and
online techniques, simulation, reflective learning,
case studies, death reviews, mentoring and
supervised clinical practice. Organisations should
also consider accessing existing external
training programs.
part b
organisational
prerequisites
actions
7.1 All members of the interdisciplinary team 7.6 Education should cover ethical and medico‑
should receive education about their roles legal issues, including the relevant
and responsibilities in relation to local professional ethical frameworks, and the
systems and processes for recognising and relevant legislation in the state or territory of
managing end-of-life care. clinical practice.
7.2 All clinicians should be familiar with the 7.7 Education should include specific
Guiding principles of this Consensus competencies for providing culturally
Statement and able to apply the Processes responsive end-of-life care to Aboriginal and
of care elements (elements 1–5). Torres Strait Islander people, and to people
from other culturally and linguistically
7.3 Patients, families and carers should be
diverse communities.
invited to participate in providing education
about end-of-life care, since patient stories 7.8 Education should include specific training for
can be powerful tools for teaching. It is providing end-of-life care to people with
important that patients, families and carers limited capacity to participate in decision-
are adequately supported to share their making – for example, those with mental
experiences. illness, disability or cognitive impairment.
This should include education about the role
7.4 Junior and student clinicians should be
and legal status of families, carers and
encouraged and enabled to take up the
substitute decision-makers.
learning opportunities offered by participating
in family meetings, multidisciplinary case 7.9 Ongoing formal training in communication
review meetings, mortality and morbidity skills should be offered to clinicians at all
conferences, and adverse event reviews. levels, as these skills are critical to the
delivery of end-of-life care.
7.5 Clinicians should receive ongoing education
about disease-specific symptom assessment 7.10 All members of the interdisciplinary team
and evidence-based symptom management should receive education about how to
relevant to their area of practice. recognise and resolve feelings of moral
distress and burnout in themselves and
their colleagues. They should also receive
information about how to seek help,
if required.
8. supervision and support for
interdisciplinary team members
I get asked to teach junior doctors about self-care and I tell them that unfortunately they are in a profession
where bravado is seen as the way to operate … We are very, very bad at this. I found as a junior doctor
doing my physician training, learning to cope with the deaths of 17 or 18-year-olds on the oncology ward,
I couldn’t look to anyone in medicine, if tears came to your eyes you were not supposed to show anyone.
General medicine physician – public hospital
Often the patient is palliated and [the death] is okay but for us the process to get there was quite
painful and distressing.
Nurse unit manager – public hospital
actions
key points
8.1 A policy framework should exist outlining
 Dealing with death and dying can be challenging how supervision and support are provided to
for interdisciplinary team members. The clinicians and other staff members who are
potential impact of providing end-of-life care in contact with patients and their families.
should not be minimised by clinicians, the team
8.2 Clinicians and other staff members who are
or the health service.
in contact with patients and their families
 Health services should facilitate access to should know when and how to access peer
peer support, mentoring and appropriate support, mentoring and clinical supervision.
clinical supervision. This information should be provided at the
start of employment and as part of regular
refresher training.
Dealing with death and dying can be challenging 8.3 Clinicians should know how to access
for members of the interdisciplinary team, and for support after particularly distressing or
other staff members such as ward clerks, porters problematic episodes of care. This may
and cleaners. It can add considerably to workplace involve accessing external services for
stress. Chronic unmanaged stress can erode formal clinical supervision, counselling or
empathy and potentially contribute to poorer debriefing.
experiences for patients. It is important that
systems are in place to facilitate access to peer 8.4 Clinicians should be supported to develop
support, mentoring and appropriate skills in self-care, reflective learning and
clinical supervision. providing peer support to colleagues.
Supervision and support systems may contribute to

learning and the development of skills in the
delivery of end-of-life care, but their primary
purpose should be to support members of the
interdisciplinary team and other staff members,
and to prevent or resolve distress.
part b
organisational
prerequisites
9. evaluation, audit
and feedback
The quality of death is what I think we should be measuring, not the fact of death. There’s all this
literature about the fact of death, do MET [medical emergency team] calls save lives … but quality of death,
well it’s silent. The literature is just silent. We don’t measure it.
Intensivist – private hospital
actions
key points
9.1 Data about the effectiveness of processes
 Ongoing monitoring of the effectiveness of and systems for delivering end-of-life care
end-of-life care systems and processes is should be collected, reviewed and reported
essential for quality improvement. locally (including over time).
 Evaluation should address the quality and safety 9.2 Clinicians must lead evaluation and audit,
of the end-of-life care provided, not just the and feed back aggregate, de-identified data
potential preventability of death. to their peers and colleagues.
 Ongoing monitoring and evaluation of processes
9.3 Monitoring and evaluation strategies should
and systems for delivering end-of-life care are
be developed to capture feedback about the
essential, to establish their efficacy, track
quality of end-of-life care from multiple
performance over time and determine priorities
disciplines (e.g. medicine, nursing, social
for improvement.
work), as well as from patients, substitute
decision-makers, families and carers.
9.4 Evaluation and monitoring should be simple,
inexpensive and feasible. The processes
should use routinely collected data and data
linkage, where possible.
9.5 Measures of the safety and quality of 9.6 Methods for collecting data could include:
end-of-life care could include:  retrospective audit of case notes
 whether triggers to identify patients (e.g. documentation of discussions, patient
approaching the end of life were correctly preferences, anticipatory plan of care and
used and applied plan of care in the terminal phase;
appropriateness and frequency of clinical
 effectiveness of treatment of symptoms observations)
 documentation of the patient’s wishes,  medication chart safety review
and alignment of the patient’s expressed (e.g. to determine whether inappropriate
wishes with actual care medications were stopped, and palliative
 real-time feedback on patient experiences medications were prescribed and
of care administered appropriately)
 feedback on their experiences from  follow-up with families, carers, clinicians
families and carers of patients who and other staff involved in the patient’s
received end-of life care  end-of-life care
 whether any existing advance care  use of tools developed for specific settings
directive or plan was enacted (e.g. the Family Satisfaction in the
 the category of death (expected/ Intensive Care Unit survey)
unexpected/diagnosis)  multidisciplinary mortality and
 the time lapse between deciding to palliate morbidity review.
or referring to specialist palliative care, 9.7 All deaths should be routinely reviewed to
and death determine whether the safety and quality
 transfers of care in the last week of life of the patient’s end-of-life care were
(e.g. transfers to or from intensive care). acceptable, and how they could have
been improved.
part b
organisational
prerequisites
10. systems to support
high-quality care
In the same way that we are concerned about falls management, or medication management, we should be
concerned about safety and quality in terms of how we manage people at the end of their life.
National manager of palliative care – private hospital group
I see this as a multistep process … we want to change the culture but that’s not going to happen,
[we] need to find concrete ways to change practice.
Palliative care consultant – public hospital
actions
key points
10.1 Systems should be in place to support
 Taking a systems approach to providing clinicians to work with patients, families and
end-of-life care is necessary to embed and carers to receive, prepare, review and/or
sustain improvements. update advance care plans and directives,
 Systems for end-of-life care should be according to the wishes of the patient.
integrated into existing organisational, These systems should align with NSQHS
and safety and quality systems to support Standard 1 (Governance for safety and
their sustainability and opportunities for quality in health service organisations) and
organisational learning. Standard 9 (Recognising and responding to
clinical deterioration in acute health care).
 Systems for end-of-life care should align with
the requirements of the NSQHS Standards. 10.2 Systems should be in place to provide
clinicians with access to essential palliative
medications 24 hours a day and 7 days a
week. These systems should align with
Organisations should consider opportunities to
NSQHS Standard 4 (Medication safety).
systematise the approach to end-of-life care where
this will support best practice. For example, 10.3 Systems should be in place to provide timely
developing consistent processes for accessing access to input from specialist palliative care
palliative medications might improve the timeliness clinicians, when required for patients with
of treatment for distressing symptoms. complex palliative care needs or as a
Technological systems such as the personally supportive resource for other clinicians.
controlled electronic health record may also provide This may include off-site access via
benefits to patients – for example, by improving videoconferencing or teleconferencing.
communication with external care providers, and
10.4 Organisations should implement processes
improving continuity and coordination of care as
to improve communication between health
patients are transferred in and out of acute health
services at transitions of care. This should
services. These systems should align with the
include processes for communicating the
requirements of the NSQHS Standards.
content of discussions about prognosis and
advance care planning. These processes
should align with NSQHS Standard 6
(Clinical handover).
10.5 Health services should work with community
care providers to ensure that systems are in
place for communicating and accessing
advance care directives or plans developed
in community care settings.
10.6 Systems should be in place to facilitate
appropriate documentation about end-of-life
care, and to reduce the burden of
documentation and data collection
when possible.
10.7 Technological systems and solutions should
be implemented where they will support safe
and high-quality end-of-life care, in
accordance with the essential elements in
this Consensus Statement.
part b
organisational
prerequisites
appendices
appendix a: terminology
Clarity and agreement are lacking about the meaning of many terms that are commonly used in relation
to end-of-life care. It is important for all those involved in providing end-of-life care to have a common
understanding of what such terms mean in practice. Below is a list of some common terms and their
meanings in the context of this document.
Term Description
Acute healthcare A hospital or other healthcare facility providing healthcare services to patients for short
facility1 periods of acute illness, injury or recovery.
Advance care A type of written advance care plan recognised by common law or specific
directive2 legislation that is completed and signed by a competent adult. It can record the
person’s preferences for future care, and appoint a substitute decision-maker to
make decisions about health care and personal life management.
In some states, these are known as advance health directives.

Advance care plan 2 An advance care planning discussion will often result in an advance care plan.
Advance care plans state preferences about health and personal care, and
preferred health outcomes. They may be made on the person’s behalf, and should
be prepared from the person’s perspective to guide decisions about care.
Advance care A process of planning for future health and personal care, whereby the person’s
planning 2 values and preferences are made known so that they can guide decision -making at
a future time when the person cannot make or communicate their decisions.
Formal advance care planning programs usually operate within a health,
institutional or aged care setting after a life-limiting condition has been diagnosed,
and frequently require the assistance of trained professionals. However, people
can choose to discuss their advance care plans in an informal family setting.
Carer3 A person who provides personal care, support and assistance to another individual
who needs it because they have a disability, medical condition (including a
terminal or chronic illness) or mental illness, or they are frail and aged.
An individual is not a carer merely because they are the spouse, de facto partner,
parent, child, other relative or guardian of an individual, or live with an individual
who requires care.
Clinician 1 A healthcare provider, trained as a health professional. Clinicians include
registered and nonregistered practitioners, or members of a team of health
professionals providing health care who spend the majority of their time providing
direct clinical care.
Dying The terminal phase of life, where death is imminent and likely to occur within hours
or days, or occasionally weeks. This is sometimes referred to as ‘actively dying’.
1
Australian Commission on Safety and Quality in Health Care. National Safety and Quality Health Service Standards.
Sydney: ACSQHC, 2011.
2
Working Group of the Clinical Technical and Ethical Principal Committee of the Australian Health Ministers’ Advisory Council. A national
framework for advance care directives. Adelaide: Australian Health Ministers’ Advisory Council, 2011.
3
Carer Recognition Act 2010. (Accessed 16 July 2014, at www.comlaw.gov.au/Details/C2010A00123.)
Term Description
End of life4 The period when a patient is living with, and impaired by, a fatal condition, even if
the trajectory is ambiguous or unknown.
This period may be years in the case of patients with chronic or malignant disease,
or very brief in the case of patients who suffer acute and unexpected illnesses or
events, such as sepsis, stroke or trauma.
End-of-life care 4 Includes physical, spiritual and psychosocial assessment, and care and treatment
delivered by health professionals and ancillary staff. It also includes support of
families and carers, and care of the patient’s body after their death.
People are ‘approaching the end of life’ when they are likely to die within the next
12 months. This includes people whose death is imminent (expected within a few
hours or days) and those with:
 advanced, progressive, incurable conditions

 general frailty and co-existing conditions that mean that they are expected to
die within 12 months
 existing conditions, if they are at risk of dying from a sudden acute crisis in
their condition
 life-threatening acute conditions caused by sudden catastrophic events.
Family5 Those who are closest to the patient in knowledge, care and affection. This may
include the biological family, the family of acquisition (related by marriage or contract),
and the family and friends of choice.
Goals of care The aims for a patient’s medical treatment, as agreed between the patient, family,
carers and healthcare team. Goals of care will change over tim e, particularly as
the patient enters the terminal phase.
Medical goals of care may include attempted cure of a reversible condition, a trial
of treatment to assess reversibility of a condition, treatment of deteriorating
symptoms, or the primary aim of ensuring comfort for a dying patient.
The patient’s goals of care may also include nonmedical goals – for example,
returning home or reaching a particular milestone, such as participating in a
family event.
Interdisciplinary A team of providers who work together to develop and implement a plan of care.
team 4 Membership depends on the services required to identify and address the
expectations and needs of the patient, carers and family. An interdisciplinary team
might typically include one or more doctors, nurses, social workers, spiritual advisers,
pharmacists and personal care workers. Other disciplines may be part of the team,
depending on the needs of the patient and the resources available. Hospital
volunteers, patients, carers and family members may also be considered as part of
the interdisciplinary team.
4
General Medical Council. Treatment and care towards the end of life: good practice in decision making. (Accessed 16 July 2014,
at www.gmc-uk.org/guidance/ethical_guidance/end_of_life_care.asp.)
5
Palliative Care Australia. Palliative care: glossary of terms. Canberra: Palliative Care Australia, 2008.
Term Description
Limitations of Medical decisions that may be made to limit the treatments that are, or coul d be,
medical treatment provided when they will not benefit the patient. A decision to not attempt
cardiopulmonary resuscitation if a patient suffers a cardiopulmonary arrest is
one example of a limitation of medical treatment.
Similar terms that are in common use include withdrawal or withholding of

medical treatment.
Decisions to limit medical treatment may avoid prolongation of dying but will not
cause a patient’s death. This is quite different from the practice of euthanasia,
where death is deliberately and purposefully hastened.
Nonbeneficial Interventions that will not be effective in treating a patient’s medical condition or
treatment improving their quality of life. Nonbeneficial treatment may include interventions such
as diagnostic tests, medications, artificial hydration and nutrition, intensive care, and
medical or surgical procedures. Nonbeneficial treatment is sometimes referred to as
futile treatment, but this is not a preferred term.
Palliative care 6 or An approach to treatment that improves the quality of life of patients and their families
palliative approach facing life-limiting illness, through the prevention and relief of suffering. It involves
early identification, and impeccable assessment and treatment of pain and other
problems (physical, psychosocial and spiritual).
Patient The primary recipient of care.
Resuscitation Documents completed by a doctor to outline the plan of care in relation to
orders/plans emergency treatment of severe clinical deterioration.
Not for resuscitation (NFR) and do not attempt resuscitation (DNAR) orders relate
solely and specifically to decisions to not perform cardiopulmonary resuscitation if
the patient has a cardiac or respiratory arrest. In some organisations, decisions
about other specific limitations of medical treatment may also be listed as part of a
resuscitation plan (e.g. decisions to call a medical emergency team or transfer
a patient to intensive care if they deteriorate).
6
World Health Organization. WHO definition of palliative care. (Accessed 16 July 2014, at www.who.int/cancer/palliative/definition/en.)
Term Description
Specialist Services provided by clinicians who have advanced training in palliative care.
palliative care The role of specialist palliative care services includes providing direct care to patients
with complex palliative care needs, and providing consultation services to support,
advise and educate nonspecialist clinicians who are providing palliative care.
Substitute A person appointed or identified by law to make substitute decisions on behalf of a
decision-maker7 person whose decision-making capacity is impaired. Substitute decision-makers
have legal authority to make these decisions; the relevant legislation varies
between jurisdictions (states and territories).
A document that appoints a substitute decision-maker to make health, medical,

residential and other personal decisions (but not financial or legal decisions) is
considered to be an advance care directive. More than one subs titute decision-
maker may be appointed under an advance care directive.
There are three categories of substitute decision-makers:
 substitute decision-makers chosen by the person (e.g. one or more enduring
guardians appointed under a statutory advance care directive, or a nominated
substitute decision-maker in a common law advance care directive)
 substitute decision-makers assigned to the person by the law in the absence of
an appointed substitute decision-maker (e.g. family member, carer or
‘person responsible’)
 substitute decision-makers appointed for the person (e.g. a guardian appointed
by a guardianship tribunal).
Terminal phase The hours, days or, occasionally, weeks when a patient’s death is imminent.
This is sometimes referred to as the period when a patient is actively dying.
Working Group of the Clinical Technical and Ethical Principal Committee of the Australian Health Ministers’ Advisory Council.
7
A national framework for advance care directives. Adelaide: Australian Health Ministers’ Advisory Council, 2011.
appendix b: contributing documents
and web sites
Advance Care Planning Australia. (Accessed 22 July Government of South Australia. Advance care
2014, at http://advancecareplanning.org.au/.) directive DIY kit. Adelaide: Government of South
Australia, 2014.
Australian and New Zealand Intensive Care Society
and College of Intensive Care Medicine. Statement Guy’s and St Thomas’ NHS Foundation Trust.
on withdrawing and withholding treatment. How multi-disciplinary teams use the AMBER
Melbourne: ANZICS, 2010. care bundle. (Accessed 17 September 2012, at
www.ambercarebundle.org/about/how-teams-use-
Australian and New Zealand Intensive Care Society amber.aspx.)
and College of Intensive Care Medicine. ANZICS
statement on care and decision-making at the end of Health Performance Council of South Australia.
life for the critically ill. Consultation draft edition 1.0. Improving end of life care for South Australians.
Melbourne: ANZICS, 2014. Adelaide: Government of South Australia, 2013.
Australian and New Zealand Society of Palliative Hospice Friendly Hospitals Programme. Quality
Medicine. ANZSPM position statement (2014) standards for end-of-life care in hospitals.
on quality end-of-life care, part 1. Canberra: Ireland: Irish Hospice Foundation, 2010.
ANZSPM, 2014.
Human Resources Branch. Resource guide for
Australian Commission on Safety and Quality in critical incident stress debriefing in human service
Health Care. National Consensus Statement: agencies. Melbourne: Victorian Department of
essential elements for recognising and responding Human Services, 1997.
to clinical deterioration. Sydney: ACSQHC, 2010.
Independent Review of the Liverpool Care Pathway.
Australian Commission on Safety and Quality in More care, less pathway: a review of the Liverpool
Health Care. National Safety and Quality Health Care Pathway. Independent Review of the Liverpool Care
Service Standards. Sydney: ACSQHC, 2011. Pathway, 2013. (Accessed 17 February 2015, at
www.gov.uk/government/uploads/system/uploads/attach
Australian Government Department of Health. End of ment_data/file/212450/Liverpool_Care_Pathway.pdf)
life care. Canberra: Department of Health, 2013.
National Institute for Health and Care Excellence.
Australian Government Organ and Tissue Authority. End of life care for adults quality standard. London:
(Accessed 23 July 2014, at www.donatelife.gov.au.) NICE, 2011. (Accessed 18 September 2012, at
Australian Medical Association. The role of the http://guidance.nice.org.uk/QS13.)
medical practitioner in end of life care. Canberra: National Palliative Care Program. Providing culturally
AMA, 2007. (Accessed 17 February 2015, at appropriate palliative care to Aboriginal and
https://ama.com.au/position-statement/role-medical- Torres Strait Islander people: practice principles.
practitioner-end-life-care-2007-amended-2014.) Canberra: Australian Government Department
Gold Standards Framework Centre. of Health, 2003.
The GSF prognostic indicator guidance. 2011. New South Wales Agency for Clinical Innovation.
(Accessed 17 February 2015, at Diagnostic report to inform the model for palliative
www.goldstandardsframework.org.uk/cd- and end of life care service provision.
content/uploads/files/General%20Files/Prognostic%2 Sydney: Agency for Clinical Innovation, 2014.
0Indicator%20Guidance%20October%202011.pdf.)
New South Wales Agency for Clinical Innovation. Tony McBride and Associates. ACT Local Hospital
Model for palliative and end of life care service Network Council forum on end-of-life issues and
provision. Sydney: Agency for Clinical decision-making. Final report. Tony McBride
Innovation, 2014. Community Engagement, 2013.
New South Wales Department of Health. Victorian Department of Health. Advance care
Guidelines for end-of-life care and decision-making. planning: having the conversation. A strategy for
Sydney: Department of Health, 2005. Victorian health services 2014–2018.
Melbourne: Department of Health, 2014.
New South Wales Department of Health.
Advance care planning for quality care at the end Western Australian Department of Health.
of life action plan 2013–18. Sydney: New South Pathway for renal palliative care services in Western
Wales Government, 2013. Australia. Perth: Department of Health, 2012.
Palliative Care Australia. Standards for providing Working Group of the Clinical Technical and Ethical
quality palliative care for all Australians. Principal Committee of the Australian Health
Canberra: Palliative Care Australia, 2005. Ministers’ Advisory Council. A national framework for
advance care directives. Adelaide: Australian Health
Palliative Care Australia. Palliative care: glossary Ministers’ Advisory Council, 2011.
of terms. Canberra: Palliative Care Australia, 2008.
Palliative Care Australia. Health system reform and

care at the end of life: a guidance document.
Canberra: Palliative Care Australia, 2010.
Palliative Care Outcomes Collaboration,

University of Wollongong. (Accessed 24 April 2013, at
www.pcoc.org.au.)
Program of Experience in Palliative Care.

Welcome to PEPA. (Accessed 24 April 2013, at
www.pepaeducation.com/default.aspx.)
SA Health. Guidelines: clinical care planning for end

of life 7 step pathway. Pilot version.
Adelaide: Government of South Australia, 2013.
Scottish Government. Living and dying well: building

on progress. Scottish Government, 2011.
(Accessed 19 September 2012, at
www.scotland.gov.uk/Publications/2011/01/27090834
/0.)
Tasmanian Government. What is healthy dying?

(Accessed 24 April 2013, at
www.dhhs.tas.gov.au/__data/assets/pdf_file/0006/96
378/Web_Healthy_Dying_info_combined.pdf.)
appendix c: consultation about
the consensus statement
A draft version of this Consensus Statement was
released for consultation in January 2014. More than
200 individuals and organisations responded to an
online survey, and 74 formal submissions were
received. Consultation workshops were held in each
of the states and territories. These involved more than
340 health professional and consumer participants.
Feedback from the consultation process has been
incorporated into this final Consensus Statement.
Details of the consultation feedback can be found in
the consultation report on the Commission’s web site.
A background paper, Safety and quality of end-of-life

care in acute hospitals, provided the foundation for
the development of this Consensus Statement. It is
available on the Commission’s web site:
www.safetyandquality.gov.au/publications/safety-and-
quality-of-end-of-life-care-a-background-paper/
During the preparation of the background

paper, a series of preliminary consultation
interviews and focus groups were held with
consumers and carers, interdisciplinary team
members, hospital executives and policy-makers
from around Australia. Quotations from these
interviews are used in the Consensus Statement.

Essential Elements For Safe and High-Quality End-Of-Life Care

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national consensus statement

essential elements for

2. Teamwork and coordination of care 13

4. Use of triggers to recognise patients approaching the end of life 17

7. Education and training 24

8. Supervision and support for interdisciplinary team members 26

9. Evaluation, audit and feedback 27

10. Systems to support high-quality care 29

The Consensus Statement may not apply to

A number of significant events might indicate that

When opportunities for shared or supported

The patient’s goals of care and the treatment plan

Doctors are under no obligation to initiate or

When a patient enters the terminal phase of their

Patients have the right to refuse medical treatment.

It takes a lot of skill sometimes to recognise when somebody is dying.

Intensive care liaison nurse – public hospital focus group

A fundamental first step in providing safe and

Clinicians should be aware of the referral criteria,

When concerns are raised about a patient

Nurse – public hospital focus group

 clear dispute resolution processes, 6.7 A formal governance process should be in

Having an educated and suitably skilled and

General medicine physician – public hospital

Supervision and support systems may contribute to

In some states, these are known as advance health directives.

 advanced, progressive, incurable conditions

Similar terms that are in common use include withdrawal or withholding of

A document that appoints a substitute decision-maker to make health, medical,

Palliative Care Australia. Health system reform and

Palliative Care Outcomes Collaboration,

Program of Experience in Palliative Care.

SA Health. Guidelines: clinical care planning for end

Scottish Government. Living and dying well: building

Tasmanian Government. What is healthy dying?

A background paper, Safety and quality of end-of-life

During the preparation of the background

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